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My daughter has crohns

First off I just want to say this disease sucks! Unfortunately for my 8 year old it is heriditary to a certain extent and thats how she got it. In a nut shell it started with blood in her stool. NOT the most common symthom. But after a colonoscopy that is what they came up with. I have a hard time just accepting that it is Crohns because so many other things have the same symthoms. Well she was doing well for several months then she flared up i guess. They keep saying they dont know if it is a flare or if this is her base line but i have a seroius problem with blood in the stool because to me that means there is inflamation somewhere and it scares me what could happen if that goes untreated. It makes me mad when people say that lots of kids have blood in there stool and its no big deal. I guess that is why i am on this forum, i would really appreciate words of wisdom and support from people who know what we are going thru.Since she is having a flare and the medication isnt working we are going in for the second colonoscopy this year, next week:( Happy holidays NOT. Wish us luck. Thanks :)
 
Location
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Hi mk34 and welcome
Sorry that your daughters got this horrible disease. Its hard to accept at first.
I was the same hoping and praying it was something else. I had never even heard of this disease before my daughter was diagnosed. Till this day i still think maybe they got it wrong....but in reality they haven't..:(

How long ago was she diagnosed and what medication is she on?

You have found your way to an amazing site the parents here are unbelievable...:ysmile:..there's always someone to offer advice or comfort.

Keep us posted and good luck with the colonoscopy.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum.

I am sorry to hear that your daughter is not doing well at the moment :( What meds is she on currently? I must admit I have never heard of it being normal to have blood in your stool especially if you are diagnosed with an IBD! What other symptoms is she getting at the moment? As mentioned above we have a great bunch of mums and dads here so you might also like to check out our parents forum to have a chat with the folks here as well: http://www.crohnsforum.com/forumdisplay.php?f=49.

Please keep us updated on how you get on.

AB
xx
 
mk34, just wanted to welcome you to the forum and echo Angrybirds thoughts to check out the Parents Forum as there are a wonderful group of parents there.

My son is 16 and was diagnosed earlier this year, he is on Remicade + methotrexate and doing well so far. It is early in on the add of Methotrexate to the med mix so we are awaiting blood results now to see where we stand. My son's TI is the area with active CD. He rarely has blood in his stool but that is probably due to the active area being further up in his digestive tract.

I hope your daughter is able to have some relief soon. Feel free to ask question, vent, or what not we are all going through this journey and it is great to have the support of other parents that are dealing with the IBD.
 
Mk34, just wanted to say welcome to the forum. Hope your daughter is feeling better soon. For my 2 cents worth. I don't think blood in the stool in common in children without some kind of issue going on.
 
Welcome, welcome mk34. So glad you have found us. This community is more of a family environment as we take the glorious journey with you, meaning we are here whenever you may need us. I do hope things start looking up for your daughter. My 17 yo was just diagnosed on Dec. 3 rd/12 and I'm frantic, as i was diagnosed in May of this year. Keep your spirits high! - hugs-
 

my little penguin

Moderator
Staff member
:hug: My son is 9 and was dx last year while he was still 7.
He is currently on Remicade and asacol.
He occasionally has blood in his stool.
His disease is located from his esophagus to his rectum ( hence the blood).
The majority is in his TI.

What did the biopsy slides from her first colonscopy say?
Where is her disease located?
what other meds has she been on?
What other symptoms other than blood does she have?

WE also got a 2nd and third opinion for Ds to determine if the dx of crohn's was correct. Unfortunately all three Gi agreed ( even from different states and hospitals) it was crohn's.

Good luck with your 2nd scope-
hope you get swift answers.:ghug:
 
First off I just wanna say WOW. You guys all sound awesome and very supportive which is something we all need during certain times dealing with this disease. We have recently been back to the doctor and started some new medications. They found that the inflamed spots that they saw earlier are now cleared up (yea) but she now has colitis. Which I have been told by someone who has crohns that with this disease comes many itis's, is this true? They currently have her on Asacol which she was on before. They added Omeprizole, Prednisone, and 6MP. She seems to being doing awesome. NO MORE blood!!!!!!!! The Prednisone must have went to work right away becuz the blood was completely gone within days. It takes months for the 6MP to kick in hence both steriods at once. We are already weaning her off of the Predinsone. I spoke to the doctor about what these meds can do to a person but leaving this untreated was obvoiusly not an option. B.T.W to answer some questions her disease is in her colon right now. I listed the meds she is on and her only other symthom before being diagnosed was pain in her waist area when she had a b.m. and she has this symthom for several years we just had no idea until blood showed up that anything was going on. If anyone has dealt with these medications or has any info I would certainly appreciate it:) Until next time.
Thanks again everyone!!!
 
So glad the prednisone has tackled her symptoms. Pred is the steroid, 6MP is an immunosuppresant, we have a parents thread on 6mp(click here) if you would like to browse through it and get other parents' experiences with it.

There are many "itis" to CD colitis is when the CD is active in the colon, there is also ileocolitis, which is the most common and it is when the CD affects the ileum, terminal ilem and colon. There are others as well and I'm sure another member can give you more detailed info on those.

I hope that the 6MP takes over quickly and she has an easy taper on the pred!
 

Angrybird

Moderator
Location
Hertfordshire
I am glad to hear that your daughter is improving, has she been given a calcium supplement to take whilst on the pred? You may notice with this that she will have a good appetite and might get a rounded 'moon' face, this is normal for this med but will calm down once she is off this. Hopefully the 6mp will do the trick for her, it certainly has done wonders for me so far:)
 
It's great to hear your little one is feeling better. I would like to encourage you to visit the 6mp and prednisone threads to get an insight on he medications. Like angry said, pred does increase the appetite and weight gain is normal. Once the taper starts most regress to normalization within ~ 3 months or less.best wishes to you on journey, i pray it continues to go well!! -hugs-
 
Well, we just got the results from the second round of labs and it looks like she has some elevated liver enzymes so they are sending special labs to be done ASAP. :( This is not what I wanted to hear. It seems like thing get better then they get worse. A roller coaster ride for sure. Sounds like they are thinking they may need to adjust the 6mp. I hope we get answers soon as some of the things I have read have me pretty scared! I hope all of you are doing well in your battles:)
 

my little penguin

Moderator
Staff member
Glad they are doing the labs-
It is scary- We had that happen with DS twice while on 6-mp.
Knowing they are on top of it helps.
If it was too high the docs would call immediately and tell you to stop.
BTDT lab draw at 3:30 and GI phone call by 5 the same day to stop 6-mp.

Hope the new labs get things in line for your child quickly.
 
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